Autism Diagnostic Tools

Researchers call for open access to autism diagnostic tools

Technology transfer: To identify children with autism, low-income countries need diagnostic methods that are low cost and simple to learn.

Most of the world’s children live in low- and middle-income countries. Yet few epidemiological studies of autism have been conducted in these countries, and little is known about how the symptoms of autism vary from culture to culture.

“There are glaring disparities globally, and even within the U.S., in terms of where the research on autism is being done, who is included in studies of autism and the diagnostic and therapeutic services available, ” says Maureen Durkin, professor of population health sciences and pediatrics at the University of Wisconsin School of Medicine and Public Health.

Her clarion call drew a standing ovation.

Researchers who attended her talk say she tapped into a broadly felt, but often only dimly articulated, sense that autism research needs to become more inclusive, and its benefits more accessible globally.

Distribution dilemma:

Western Psychological Services, a publishing company based in Los Angeles, owns many of the common autism screening and diagnostic instruments. These include the Social Responsiveness Scale (SRS), a widely used screening questionnaire that Constantino developed, as well as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), often referred to as the gold-standard tests for diagnosis of the disorder.

Each time one of these tests is administered, the publisher charges a fee, and passes a portion of the royalties on to the test’s developers.

“I don’t think there’s any other condition in medicine in which you have to pay a royalty to a publishing company in order to make the diagnosis, ” says David Skuse, professor of behavioral and brain sciences at University College London. Skuse has helped develop two freely available tools, the Social and Communication Disorders Checklist (SCDC) and the developmental, dimensional and diagnostic interview (3di).

In many countries, paying royalties of even a few dollars represents a substantial hardship. Durkin and others say these costs not only limit access to diagnosis for individuals, but also forestall epidemiological studies, which require surveying thousands of individuals.

One reason researchers have traditionally turned to publishers is a lack of alternative distribution channels, Durkin says. A new online clearinghouse of information, DisabilityMeasures.org, attempts to address this issue by gathering free diagnostic tools for developmental disabilities such as autism.

Matthew Maenner, who created the site, says he saw the need for such a resource after developing the Waisman Activities of Daily Living Scale, a free quality-of-life assessment for teenagers and adults with autism.

“I thought, ‘How do we distribute this to people who might not think to look up our lab’s website?'” recalls Maenner, a former student of Durkin’s who is now a researcher with the Epidemic Intelligence Service at the U.S. Centers for Disease Control and Prevention. “People won’t necessarily know something is out there that could be really helpful, ” he says.

Source: sfari.org

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